What I learned during this year’s National Minority Health Month

The infamous Tuskegee syphilis study was so well-documented that it provided a valuable lesson for future generations.

There’s something about the word “minority” that either makes people think “that’s us” or “that’s someone else.”

This is National Minority Health Month and in attending a fascinating luncheon at the University of Houston last week, I learned that, in Houston, everyone is a racial or ethnic “minority.” That means, everyone should be concerned about health equity.

Perceptions are changing when it comes to how we make sure everyone receives something close to equal care. “Health disparities” — a longtime buzz phrase which focuses on the problems in delivering health care — is gradually being replaced by the more solutions-oriented “health equity.”

One aspect of Houston’s celebration of National Minority Health Month included marking National Minority Cancer Awareness Week — the third full week of April. And it was on this occasion that Lovell Jones, Ph.D., director of the Center for Research on Minority Health (CRMH) at the University of Texas M.D. Anderson Cancer Center, announced a new research venture to address why some people receive better health care or have better health outcomes than others.

This year, the CRMH will become the Dorothy I. Height Center for Health Equity & Evaluation Research (CHEER). At first, it was difficult to understand why this new entity would be based in the Graduate College of Social Work at the University of Houston until I read more about the center’ mission: to change the paradigm in achieving health equity by bringing together the many possible influences that might affect health and quality of life. Those include theory; basic, behavioral and clinical research; clinical and behavioral applications; community-based participatory research; health policy; environmental health; city planning; history and social determinants of health.

In one of the sorriest chapters in this nation’s history, we allowed poor black men in the rural South to live with curable syphilis — some for decades — in the name of research.

Our collective memory of this study is among the reasons why people in some communities have more distrust of health professionals, avoid preventive care and decline participation in medical research.

The other guest speaker, epidemiologist William “Bill” Jenkins, not only explained why the Tuskegee Study remains relevant today, but he also implored the audience not to confuse the Tuskegee Study with the Tuskegee Experiment.

In his 1895 “Atlanta Address” or “Atlanta Compromise Speech” in Georgia, Booker T. Washington, leader of a tiny Alabama school (which grew into Tuskegee Institute and is now Tuskegee University), unveiled the Tuskegee Experiment. Jenkins said this “was the largest and most comprehensive and the most successful economic development program in the history of black America.”

Through the health movement, which was supported by the U.S. Public Health Service, communities throughout the American South and in other parts of the country were able to develop initiatives to increase the health status of black Americans. To overcome exclusion from majority organizations, the movement helped create national black professional groups, including the National Medical Association, National Bar Association and the National Nurses Association. Negro Health Week was created, in part, to celebrate Washington’s work and his birthday, and eventually grew into Negro Health Month — which is now National Minority Health Month.

In what was called the Tuskegee Study of Untreated Syphilis in the Negro Male, men were not told they were infected with syphilis and never signed patient consent forms to participate in the study. Because they didn’t receive treatment (even after penicillin began being mass-produced in the mid-1940s), some of the men died at the hands of scientists more interested in tracking the spread of untreated syphilis than saving lives. The study, conducted by the U.S. Public Health Service, lasted from 1932 to 1972.

Jenkins helped uncover the unethical methods of the study, end the research and ensure survivors were compensated with money and medical treatment.

Ironically, the study was so well-managed that it has become an unexpected teaching tool.

“The methods that were used, the extraordinary administration of this program, made what would have been a footnote in history, the most unethical, infamous research program in the history of America,” Jenkins said. “It was very bad because it was very good. There’s a lesson there.”

In addition, regulations were passed that required researchers to get voluntary informed consent from all persons taking part in studies and required studies using human subjects to have institutional review boards to decide whether the studies meet ethical standards.

The new Houston’s center namesake, Dorothy Irene Height, was a member of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The lifelong social worker, considered the “godmother of the civil rights movement,” served for 40 years as president of the National Council of Negro Women. She died in 2010 at 98.

2 Responses

What I have learned from this is that you never can have enough “minority theme” events. Black History, etc. all focus on minorities & guess who has created this predjudicial garbage & perpetuated it since it’s inception? The very folks that state discrimination must cease. What a joke.